MPIP: Melanoma Patients Information Page

The MPIP is the oldest and largest community of people affected by melanoma hosted through the Melanoma Research Foundation. It is designed to provide support and information to caregivers, patients, family and friends. Once you have been touched by melanoma—either as a patient or as a family member or friend of a patient—you become part of a community. It is not a community anyone joins willingly. But if you must be part of this group, you will find no better place to find the tools you need in your journey with this cancer, and the friends who can make that journey more bearable.

The information on the bulletin board is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

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AllyNTAus's picture
Replies 5
Last reply 8/25/2012 - 7:21pm

Hi everyone,

I was just wondering what others taking either the GSK or Roche BRAF inhibitor are finding in relation to hair loss - I am in week 14 of taking Dabrafenib, and in the last couple of weeks I have really started shedding a lot of hair, luckily I started with very thick hair but I am wondering where this might end up. Talking with a friend yesterday, she suggested that if I had some idea I was going to have complete or near complete hair loss I could start getting a wig made now, I hadn't thought about that.

I know this might seem like a pretty superficical concern in the context of what everyone here is going through, but if you have any experiences you are prepared to share I would be grateful.

Best wishes to everyone

Ally

A bad day's fishing beats a good day's work everytime

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Valentine's picture
Replies 10
Last reply 8/10/2012 - 8:24am

Last night I found a lump the size of a marble in my left groin, just above the scar from the lymph node dissection I had 2 years ago. I can't see the dermatologist until Sept. 5. I am worried about waiting that long to have it biopsied. How fast does melanoma grow?

Because of the lymph node dissection, I have lymphedema. I use a Flexitouch every night to help control the lymphedema. Now I don't know if I should use it. If this lump is cancer, wouldn't I just be encouraging it to spread?

So, I'm just freaking out, and I have no one to talk to about it. I know there are no real answers to my questions/concerns, but I sure would appreciate some feedback on whether it would be a good or bad idea to use the Flexitouch for the next month+.

Thanks!

Cheri

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TSchulz's picture
Replies 21
Last reply 8/3/2012 - 1:12pm

I am a little superstitious about sharing good news but since I look to this board for inspiration as much as information I have to share the news I received last week.

In May, I completed treatment at NIH on the randomized trial of TIL cells followed by IL2 with standard lymphodepletion OR TIL cells/IL2 with standard lymphodepletion plus total body irradiation.  I randomized to the arm of the trial that did not include TBI.  As many of you know, the treatment was very difficult but the NIH team was amazing and got me through it.  

I returned in June for my one month follow-up scans and received the news that my tumors had decreased in size an estimated 54.2%.  Huge news!   Then last week, at 2 months, scans showed they are approx. 70% smaller than before treatment and no new tumors were reported - equally important at this stage.  After receiving a big hug from my research coordinator she said that there was a lot of good news shared in clinic that day.  

I know my story does not end here but we are hopeful to see this trend continue.  This is the first good news (concerning melanoma) we've had in over a year so we are celebrating and looking forward to a brighter summer!

I wish all the best to everyone dealing with this disease - we need to see a bunch more NED in 2012.

Troy

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Maggie23's picture
Replies 5
Last reply 7/31/2012 - 6:08am
Replies by: LynnLuc, Maggie23, gabsound, Anonymous

My mother has been recently diagnosed with stage 4 Melanoma.  It is in her lungs and lymph nodes.  We have just received the results of the BRAF mutation and she is negative.  We are all confused about this and I am having a difficult time finding information online to tell us if this is a good result or a bad result.  All of these posts have been very helpful to us and I was wondering if any of you knew anything about BRAF mutations?

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My mother has been recently diagnosed with stage 4 Melanoma.  It is in her lungs and lymph nodes.  We have just received the results of the BRAF mutation and she is negative.  We are all confused about this and I am having a difficult time finding information online to tell us if this is a good result or a bad result.  All of these posts have been very helpful to us and I was wondering if any of you knew anything about BRAF mutations?

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rjcravens's picture
Replies 5
Last reply 7/31/2012 - 6:23am

Question- About a month and a half ago I had this upper resp infection that made its way around out house. Well, the upper resp. part improved but I had this awful cough that would not go away and was terrible at night or anytime I laughed and did any activity. So the week before last, I went to doc. (primary family) He said I prob had some stubborn brochitis and gave me advair, z-pak, and cough syrup. Well the cough is better. However, the entire time I have had this stabbing pain that feels like its between my lung and spineand has a lingering burn. When i cough it hurts terrible, but even when I am just sitting here this stabbing pain comes and goes. I tried aleve and nothing. But when I went to doc they did a chest xray when they dx the bronchitis. Wouldn't it have shown up on chest xray if something to be concerned about?

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deardad's picture
Replies 14
Last reply 8/6/2012 - 7:26pm

Sorry no news is good news at the moment.

I am loosing my dear dad, he can nearly no longer walk and his right arm is now going numb.

The damm flu has robbed him of sleep for 4 nights and taking away his final quality of life.

I feel ripped off and desperately sad.

I hate melanoma.

Nahmi from Melbourne

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Anonymous's picture
Anonymous
Replies 13
Last reply 8/4/2012 - 10:01pm

I recently had a very dark mole removed. I have lots of moles and this one definitley looked different. About the size of pencil eraser. I had punch biopsy and dr took margins and I received 4 stitches. She also talked about plaque. She called one week later and said they could not rule out melanoma so they are sending it on to expert in California. Wondering how worried should I be? Dr in California is the worlds leading authority on melanoma. Is this just for liability? Not sure what to think.

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bikerwife's picture
Replies 1
Last reply 7/31/2012 - 7:50am
Replies by: deardad

Had 5 mets removed from brain in feb sucessfully. Lastest scans show 2 more very small ones not sure if new are was there before and 2 little to see. Due to do gamma knife again in aug.

He is taking zelobraf and in four weeks all his visible tumors have completely disappeared. Hoping one inside chest cavity on one on kidney are shrinking also.

I'm worried. About doing gamma knife again but our dr assures us it will be fine and that they can get them.

What God leads u to he will. Lead you through

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Anonymous's picture
Replies 4
Last reply 7/30/2012 - 6:37pm
Replies by: rbruce, Candi13, LynnLuc, melmar

Hi Margo,

 

How are you doing on the Merck trial??? Any side effects?

I think that you mentioned your second set of scans would be in July. I hope that you found no cancer & NED.

My brother, was dx 2010-stage 4. He is on this trial in San Antonio. His last scans showed 50% shrinkage on 3 tumors- 2 lung, and liver.

It is nice to share info on these trials.

Anyone else on this Merck trial??/ Please post how you are doing so we can share hope & encouage each other.

Wishing everyone the Best.

Tim's Sister, Annie.

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Vega0624's picture
Replies 4
Last reply 7/29/2012 - 8:58am
Replies by: Gene_S, Anonymous, deardad, Harry in Fair Oaks

My father was first diagnosed with melanoma cancer back in 08. It was found early and removed. Earlier this month, my father went to the hospital with pneumonia. The doctors had found that melanoma had actually spread, and found bits of it in his right lung. During this week, the doctors discovered both lungs mets (the right one being worse), liver mets, brain mets (one small tumor and just recently today, 2 more). No word yet as to whether he'll undergo radiation therapy.

My father is 64, but is incredibly healthy for his age. He is very fragile at the moment though since he recently had a bronchoscopy to treat the meta in his lung. He also has had a wounded leg for the last 50 years which is potentially infected. It may be the cause of high white blood cells in his system, but has still lived a normal life with it.

I've done research on metastasis melanoma and have found an average range of 2-8 months. I have past family members that were outliers of that statistic. My grandmother was given 3 months and ended up living for 4 more years and she too had melanoma. My aunt was given 6 months but ended up living 11 years and she had throat cancer. However, neither of them had brain metastasis.

The doctors won't tell us a timeline because they aren't sure themselves, but I need to know. I am currently attending UC Irvine and classes are starting the middle of September. It is about 2 hours from home so I won't be going back often. I have come to accept that in his condition, he doesn't have long so I just want to prepare myself. I don't want to receive a phone call from my family one day in class, or during a test, or in the library, but when it does happen, I just want to be ready. Has anyone had a similar experience like this, or know an estimated timeline?

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LynnLuc's picture
Replies 9
Last reply 7/30/2012 - 8:47pm

Stage 4 NED 2 years 4 months!!~ Lynn

Advocate for your own treatment.. Stage 4 Melanoma NED Surgery,Radiation, Temodar 300Mg July 2009-March 2010, then Thorocotomy...now "Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy"

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Anonymous's picture
Anonymous
Replies 7
Last reply 7/29/2012 - 7:48pm
Replies by: Angela C, Anonymous

Angela,

How are you doing since your IL-12 treatment at NIH. I hope your scans showed that the treatment is working.

Wishing you  the BEST & NED status.

Mary

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fdess056's picture
Replies 2
Last reply 7/30/2012 - 5:22pm
Replies by: fdess056, LynnLuc

Hi, all Anyone experience or hear of mets inside the stomach?  My most recent PET scan showed activity that has just been confirmed as melanoma. I also have mets in the knee bone, lungs and brain.  I completed yervoy in March, had brain SRS in March and May.  Lung mets shrunk 65%, everything else remained stable.  We assumed yervoy was working.  Now this new situation.  I'm on steroids and scheduled to start Zelboraf on Tuesday. Any feedback would be appreciated

Thanks!

Frankd Brooklyn

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